Thursday, April 17, 2014

Didn't see THAT coming…EEG here we come.

Although I just recently posted an update, we've had a hectic few weeks.  We were lucky enough to have the construction on the upper two levels of the house completed and our belongings brought back from storage.  Everything from the garage and basement had to remain in storage until those two rooms can be finished.  We're hoping that will start next week!

Reagan had her first appointment with Dr. Lavenstein last week and it went very well and he is very pleased with her progress.  I shared the discussion we had with Dr. Pearl about the medication plan to gain his perspective and was surprised by his response.  As a reminder, originally Dr. Pearl recommended trying to bring Reagan off her meds when she turned five.  The at our last appointment he was adamantly that we should wait until she's eight.  Dr. Lavenstein recommended an EEG to verify how her brain activity looks and make a decision from there.  They were able to get us into an appointment today and it was nice not having a lot of time to think about it.  Although it is a very straight forward test that is done in the neurology office, it still brings back a lot of memories and emotions for us.

We were asked to prevent Reagan from sleeping more than 4 hours last night and ensure she doesn't sleep on the way to the appointment.  Given the appointment was at 4:30pm that was rather challenging, but we accomplished it.  They connected about 20 electrodes to her head and chest and as soon as the lights went out so was she!  The goal is to see as much natural brain activity as possible and not be distracted by activity caused by movement (including eye movement).  They let her sleep for about 20 minutes collecting both the EEG data and the video component.  After about 20 minutes they asked us to wake her up and have her keep her eyes open…but kept the lights off and we weren't allowed to shake her or tickle her since movement can affect the data being collected.  Who knew THAT would be so hard!  Once we had about 10 minutes of her awake, they started a series of light strobes that flashed about 10 times and then it went dark for a few seconds and then another series of strobes done more quickly.

Overall Reagan did a great job and took it all in stride.  We even had her smiling by the end!  We talked to her about what to expect last night and showed her pictures from her last EEG in April 2012.  It was two years ago this month that she started having her seizures again after being seizure free for over 20 months.  She was exhausted when we left and after giving her a bath to get the yucky glue residue out of her hair she was very excited about being able to go to bed.  The EEG tech and neurologist will review the results and call us in the next 5-7 days.  We're praying the results look good and she is able to start weaning off the medication.  And if not, we'll carry on with the current plan and increase her medication (to keep up with weight gain) in the next few months.

Next week we have an opthalmology appointment for Cole and then physiology and the pediatrician for Reagan in May.

After only four hours of sleep last night with a wake up call by Cole in the middle for water, it's time for me to go to bed!  I'm definitely ready for some rest myself.

Tuesday, March 25, 2014

Neurology, Neuro Ophthalmology, Neurosurgery Oh My!

I can't believe how much has happened in the last three months!  I'm going to have to keep things short so we can fit it all in….

B-E-A-R-S Bears! Bears! Bears! 
Let's start with a fun update.  The Bischoff family took a day trip up to PA for a Hershey Bears game and had a GREAT time.  Not only did both kids have fun, they made it through the entire game AND caught 3 pucks!

Family Trip to the Dentist ~ Dr. Hindman
Reagan had her second trip to the dentist in February and her teeth look great!  Cole had his teeth counted but was more than willing to wait until next time for the full treatment.

Cole's visit to the Neurologist ~ Dr. Lavenstein
We had a good visit with the Neurologist.  He was very happy to see Cole's progress but also concerned about his continued delays in fine motor skills and therefore recommended we go to see a Developmental Pediatrician.  We are still working on getting that appointment.  We plan to go back in a year to see him.

Cole's visit to the Neuro Ophthalmologist ~ Dr. Avery 
We had a good visit with Dr. Avery.  He was extremely surprised by how well Cole was able to perform during the vision tests.  He shared a GREAT analogy that really helped me with regards to Cole's delays.  He said to think about a digital camera.  You have the camera, you need a computer and you need a cable to plug it in to download the pictures.  The brain is the computer.  The eyes are the camera.  The optic nerves are the cable.  And his glasses are like focusing the lens.  Basically Cole has issues with all three components which make taking pictures extremely difficult.  And he wears glasses to focus the image, but if the camera takes a blurry picture because there is something wrong with the camera, the glasses can't make that image clear.  Although discouraging, it was a helpful analogy.  We plan to visit again in a year when Cole will be able to perform more complex testing that will hopefully tell us more about what his lifelong capabilities will be.

Open Up the Gates…here comes a FLOOD!
Well we keep praying that our long stretch of hospitalizations stops in 2014 (running since 2008).  Unfortunately our house took the hit in February and although thankful we haven't had any hospitalizations, this was a bad one.  A pipe in the master bathroom shower burst (we just had a bathroom renovation a few months ago).  Unfortunately I was out of town and Johnny awoke at 4am to water pouring out of the wall, through the floor, into the family room, through the floor, and into the basement.  By 5am the pipe was fixed.  By 9am the demo team was at the house and by noon we no longer had floors, ceilings or walls in about 1/2 of our house.  The kids are able to sleep in their rooms, but the only other livable space is the main room in the basement.  All our belongings (except the kids'  rooms and the basement couch) were moved into storage the following weekend and we are living in the basement.  We are calling it an adventure and so far the kids are tolerating the chaos very well!  Who doesn't love eating dinner on the floor every night?!

INOVA FFX Beam Signing
After running into one of our NICU docs while presenting at the National Neonatologist Conference in FL we were invited to the beam signing for the new INOVA Children's Hospital in Fairfax.  We were one of a few families in attendance with the INOVA executive team, high level local donors and INOVA staff.  It was a lot of fun being part of a ground breaking ceremony and we hope we never set foot there again!

Nascott Orthotics and Prosthetics ~ Shawn Koehler
You may remember that Dr. Morozova (Physical Medicine) recommended we have Reagan fitted for a Dynamic Movement Orthoses (DMO).  Although Reagan has tried other types of gloves for her hand such as the Benik neoprene pediatric glove, they have limited her movement and sensation such that we don't think they have been very beneficial.  They encouraged her thumb and first finger to remain isolated, but because it was so thick, she had trouble manipulating objectives. The DMO is lycra and provides increased sensory stimulation and functionality.  What I didn't know going into the appointment is that it takes 5-10 minutes to put it on because it is custom fit and very tight.  Shawn measured every finger and every part of Reagan's arm/hand and will order the custom fit glove in Reagan's chosen color - purple!  We will go back in 3-4 weeks once they have insurance approval and it is made to check the fitting.

Cole and Reagan's visit to the Neurosurgeon - Dr. Myseros
We had our yearly visit with the neurosurgeon today and there is nothing earth shattering to share.  We did talk about when Cole will need another scan and he said it is no longer necessary as long as he is doing well. How exciting is that?! As you probably remember, we would really like to stop exposing him to radiation.  We go back in a year to see him again.

UVA ~ Take Three...Times Two!
Another big update is that Reagan was screened and accepted into the CHAMP Study at UVA.  Reagan will receive constraint therapy three times each week during the last week of July and three weeks of August.  Unlike the previous constraint sessions, however, she was selected for the splint group and will only wear the splint during the therapy sessions (not for the entire month).  The study is researching whether the length of time and the type of constraint method affect overall improvement.  Although we look forward to seeing what progress she will achieve during the study, we know it will be a grueling month with a lot of challenges.  The good news, however, is that we can use the pool since she won't be in a cast all the time!!  Not to mention eating was one of the most challenging activities and again, she will not have the splint on during meals.  Given Cole is a little older and Reagan knows what to expect I have decided to take him with us. We are concerned he will lose functionality being away from his regular therapy for a month so I scheduled therapy for him with the traditional OTs who provide outpatient treatment at the Kluge Children's Rehabilitation Center.

Coming in the next two months we will have updates from neurology (Reagan), opthalmology (Cole), physiology (Reagan), orthoses (Reagan), pediatrics (Reagan), and IEP review (Reagan).  And hopefully renovations from the flood will be done !

Thursday, January 23, 2014

2014 is in like a Lion!

Wow, it has been a hectic year already!  It started with a minor fender bender (with the kids in the car). Luckily everyone was ok and the woman who pulled out in front of me had insurance.  The bad news is that it took FOREVER to get insurance to get an estimate and the snow is delaying the parts being delivered.  Some day I'll be able to get it fixed.

We also had our follow up appointment with the physiatrist, Dr. Morozova.  She was disappointed to see the increased tone (since the Botox wore off) but agreed that we should hold off on another Botox treatment to ensure we can participate in the UVA constraint research program over the summer.  We have an appointment in February to setup another evaluation and have her entered into the study (you may remember she was rejected because she had received Botox treatments within 6 months of the study intake).  Dr. Morozova has also recommended we have Reagan fitted for a new wrist brace.  Unfortunately this means a trip to DC to be custom fitted, but we were able to get an appointment in February.  She also reinforced the importance of continuing to stretch her wrist/arm to try to loosen it and increase flexibility.  She also agreed we should move forward trying to get the Bioness leg brace approved by insurance given it may take over a year to get the initial denial and go through the Medical Review Board on the appeals process (it's a $5,000 brace).  I can't tell you how much I'm looking forward to that!!

We also had a follow-up with the technician at Orthotic Solutions to revisit Reagan's leg brace.  Reagan's PT was still concerned about the fit and we're both glad we took the time for the visit.  The technician made several modifications to include remolding the angle of the upper plastic area.  Reagan was hyperextending her knee while she was walking and this minor modification really helped give her a smoother gate.

From a FUN standpoint Reagan and I had a fun trip to the American Girl doll store for lunch for the first time with her friend Emma (and her mom Amanda).  So cute to see Reagan showing an interest in dolls!

We also took Reagan and Cole skiing to Wintergreen Resort.  As you may remember, we took Reagan last year and she loved it!  We scheduled lessons for the kids with Wintergreen Adaptive Sports and the instructors impressed us again this year.  Cole struggles keeping on gloves so we were a little worried he wouldn't last, but he did great!  Both kids skied for over two hours even on a bitterly cold day.  Not only did they have fun, they want to go back!  The instructor Cole had was one of Reagan's instructors last year.  We had no idea he has a background in supporting skiing for the blind.  He was in Breckenridge in December supporting a blind slalom skiing competition where he follows a blind skier and provides visual cues as they go down the mountain.  Wow - talk about trusting someone!

Tuesday, December 31, 2013

Bischoff Year In Review

Wow, and as quickly as 2013 came it's heading out….
We had a nice, relaxing evening at home for New Years celebrating with our friends, the Coullahan's.  When you have two kids under 5 it's much easier to stay home and why not?!  We kept the tradition we started last year with Johnny streaming last year's ball drop on the TV over YouTube at 8pm.  The kids don't really know the difference and they had fun counting down to "midnight".  With the craziness of the holidays they are completely off schedule, but that will come to an abrupt end Thursday morning when the bus arrives at 7:28am.

As I reflect on the last year it's amazing to think about how much we've done and how much progress we've made!  I took Reagan to 106 appointments this year and she had another 48 therapy sessions while at school.  I took Cole to 17 appointments with another 36 therapy sessions while at school.  That means driving to an average of 2.4 appointments per week (not including those during school).  Needless to say, both kids worked very hard this year and it shows!  Both have shown amazing improvements and I can only imagine what I will be writing next year at this time!  I learn so much watching Reagan and Cole and feel so blessed to be their mother.  Many days I wonder if I push them too much, too hard or too often.  And then I wonder if I'm not pushing enough.  But in the end I see the amazing progress they are making and know that it is defining who they will become.  We all have hard days and we all shed tears, but Reagan and Cole know that I love them unconditionally, no matter who they become, what they can do, or where they take the gifts that God has given them.  

We went into 2013 hoping for a year without hospitalizations and we almost met that goal.  Both kids were in the hospital - Cole was in the ER with a shunt scare in June and Reagan was admitted and put under anesthesia for Botox injections in July.  We did have a year-over-year improvement, however, in that no one SLEPT in a hospital.  Although who really sleeps in the hospital anyway?!  We have 5 appointments coming up in January and February with specialists (not including therapy) so we will start 2014 with a busy schedule.  But we are very hopeful that 2014 will be THE year without hospitalizations!!  We haven't had a year like that since 2007 so we personally think it's WELL over due.

We had such an exciting year with camping, museums, a beach trip, and several visits to amusement parks including our first trip to Disney.  Reagan had a full year without seizures and we're hopeful to keep them under control.  Cole made it through his third year without a shunt malfunction and we're hopeful to continue that winning streak in 2014.  Remember - there's a 99% chance of a malfunction in the first 10 years and I know several kids who have had multiple revisions in the first 5 years.  So we are very blessed that he hasn't had any problems.

And with that, I'd like to end this year with the following poem, "Look Well to This Day" (Anonymous).

Look well to this day,
For it and it alone is life.
In its brief course
Lie all the essence of your existence.

The Glory of Growth
The Satisfaction of Achievement
The Splendor of Beauty

For yesterday is but a dream,
And tomorrow is but a vision.
But today well lived makes every yesterday a dream of happiness,
And every tomorrow a vision of hope.

Live like you are young again.  Play in the leaves just because you can.
And always let those around you know how much you love them.